May 2002 to May 2003

From time to time I have mentioned Patricia’s anxiety. For most of her life, she suffered from an anxiety condition which she controlled very well but around the late seventies, she developed mild OCD (Obsessive Compulsive Disorder). In the early days of the Parkinson’s Disease/MSA illness, her Neurologist warned us that the medications he was prescribing could potentially impact the anxiety and OCD problems.Whether it was caused by the illness (MSA), or the medications, or a natural progression of the anxiety, the fact was that the anxiety worsened to the point where Patricia clearly had two serious illnesses, MSA and anxiety. If Patricia had only had MSA, or an anxiety problem, managing that illness at home would have been a possibility, but the combination of both illnesses, and their severity, made caring at home a huge burden and one that I reluctantly came to accept as being too difficult for me. Patricia and I discussed this and the decision was taken to find an appropriate nursing home. I was fortunate in that although Patricia did not want to go into a nursing home, she didn’t resist such a move. She accepted that itwas a necessary move, and for that I was for ever grateful.

3 August 2002

Patricia contracted a mild bout of (lower left lung) pneumonia which required hospitalisation for 4 days. The first night (Saturday) in the hospital, I stressed the need for an air mattress but was told they couldn’t source one till Monday. On the Monday, an air mattress arrived, but it was faulty. Initially the nurses insisted it wasn’t faulty but eventually conceded that it was. By that stage, she was being considered for discharge the following day, so nothing happened. The result was thatthe pressure (bed) sores reared their ugly head again.

I thought I had found a nursing home for Patricia but it wasn’t to be. It was very near to where we lived which would have been good. It was what is called an ‘extra services’ facility which charges a refundable bond and a much higher daily rate than the standard nursing homes. They had two vacant beds but would not grant us one on the grounds that Patricia’s care needs were too high for their current staff levels and their experience. What a load of crap.

18 September 2002

Patricia had just returned home from another respite care stay at Bethlehem hospital. During the three week stay, a number of changes were made to her medication. The Sinemet (levodopa/carbidopa) was reduced from 10 to eight tablets a day, the Rivotril (clonazepam) and Ativan (lorazepam) increased slightly, the Parlodel (bromocriptine) and Symmetrel (amantadine) removed, and regular paracetamol added.

6 October 2002

Due to an oversight, Patricia’s catheter was not replaced when it should have been. As a result, the nurses who replace it during the home visits were unable to remove the old catheter. Scar tissue had grown over the end of the tube. So she had to endure a day visit to a clinic to have her Urologist remove the catheter and insert a new one.

Unfortunately, due to the longer than normal time seated in her wheelchair on that day, a recently recovered pressure sore re-erupted.

23 October 2002

The pressure sores had almost healed but Patricia had spent the past three weeks in bed. She was due to go back to Bethlehem hospital in a week’s time to address the issue of pressure sores and long term management of them.

Her condition continued to deteriorate. She no longer had any food or drink orally, and although her enteral feed gave her all the nourishment she needed, I am sure she was losing weight. Her limbs had become more rigid and her right arm seemed to be permanently across her chest and pressed down on the PEG tube. She wore splints on her hands at night to prevent her fingers curling in and her nails digging into her palms. They were considering a splint for her right arm to prevent it pressing on the PEG tube.

Her voice was non existent and we were using the alphabet board all the time for communication, but it was so slow and SO frustrating for both of us. Sometimes she blinked her eyes to indicate ‘yes’ to a question but quite often when she blinked, her eyes closed and she had trouble opening them again!

Patricia had never been one to sleep during the daytime despite being encouraged to do so. But she was now having little cat naps during the day.

The medication changes had proved to be successful and I had asked the hospital to review the medications during her next respite care stay. But she certainly needed her medications and clearly experienced ‘end of dose’ if Iwas late with the next medication.

31 October 2002

Patricia was back in Bethlehem Hospital and I suspected that she was going to be there for quite some time. She had slipped quite a lot in the past few weeks and her shortness of breath was very acute at times causing her anxiety to worsen. I suspected that Patricia was then at the palliative care stage of her illness. I met with the hospital psychiatrist to discuss how we may be able to make Patricia more comfortable.

At that stage, it was evident that Patricia wasn’t going to be coming home from hospital and I was able to accept that as long as the quality of care was sufficiently high, but if she had been unhappy there, I was prepared to take her home and call in the local palliative care group to help me manage her.

11 November 2002

Patricia was still in Bethlehem Hospital. She appeared to be reasonably content to be there. This may have been partly due to changes in medication. The main medication, Sinemet (levodopa/carbidopa) had again been reduced to 1½ tablets 4 times a day which means her daily intake of Sinemet had been reduced from 10 a day to 6 a day in 2 months. In addition, her Rivotril (clonazepam) had been increased slightly and the Temaze (temazepam) stopped. But the significant change, I think,was the introduction of Aropax (paroxetine). She was only on 1 x 20mg tablet a day at that time but I think it had the desired effect of making her calmer and therefore less anxious. I was pleased but wished it had been introduced earlier.

Patricia had always said that she would prefer to be in a nursing home rather than permanently in Bethlehem Hospital, or any other hospital. But by this stage she seemed to be reconciled that maybe Bethlehem Hospital was where she should be. Again, I think this could have been the influence of the Aropax.

20 November 2002

I thought hard and long before writing this bulletin. I didn’t want to write it but maybe it will help some other Carer who might face this situation one day.

I hadn’t yet met with the Bethlehem Hospital medical team but I was expecting that they were going to keep Patricia there permanently. So I decided to tell Patricia that it was most unlikely that she would be going home again. I asked the nurses to put Patricia in her wheelchair and took her to a private room so that we wouldn’t be disturbed while I told her. I did it on my own because I felt I had to. To the Carers reading this, I don’t recommend it. It is SO difficult emotionally. Even if you know you are going to get upset, have a friend and/or a nurse with you. Because Patricia was by this stage so disabled and could hardly move her hands and was unable to talk, she found it difficult to communicate at the best of times. When she was upset, as she was when I told her the sad news, communication was impossible, yet her mind was as active as it always had been. I left her not knowing whether she was upset because of her illness, or because she knew she wouldn’t be going home again, or whether she was angry with me. Or whether it was because I told her one more time that I still loved her, or was it because she couldn’t tell me how she felt. I don’t know, and I never will. That was something I was going to have to come to terms with.

One of Bethlehem’s music therapists was on the ward at the time, and when she knew that I was going to talk to Patricia, and the reason why, she offered to come in afterwards and play Patricia her favourite music on her portable keyboard. That helped a lot. Music therapy had always been good for Patricia.

3 December 2002

I had had my meeting with the medical team at Bethlehem Hospital. They had reviewed Patricia’s situation and acknowledged the difficulties I was having in finding a nursing home. They believed that Patricia was in need of palliative care and specialist care beyond that which nursing homes offer. Unless there was a significant improvement, which was regarded as highly improbable, Patricia was to stay stay at Bethlehem Hospital. The Clinical Director Neurology and the Speech Therapist met with Patricia the next day and explained their decision to her. I met with Patricia shortly after and was surprised, and relieved, how relaxed she was with it all.

18 December 2002

It was a difficult decision to make, but I decided not to take Patricia home for Christmas. I believed it would be too difficult for BOTH of us and it would be especially hard for her when the time came to go back to Bethlehem Hospital. Patricia accepted this decision quite well. I spent as much time there over Christmas as I could.

16 January 2003

Christmas came and went. It was an experience. I took our Christmas tree into Patricia’s ward and set it up. I also took the Christmas cards in and put them on and around the board behind her bed. I think in all, there were 78 cards!

Because she couldn’t talk and had great trouble using the alphabet board, I’m not really sure how Patricia felt about Christmas in Bethlehem (the hospital, not the place!). The staff were very good but I have to be honest and say that the food could have been better.

Her condition is pretty much unchanged although she does have a nasty pressure sore on her coccyx. Pressure sores were by then almost inevitable because Patricia was not able to lie flat on her back because it made her choke; PEG feeds provide quite a lot of protein but probably not enough; the advanced stage of her illness and her age were a major contributing factor; and her anxiety illness didn’t help.

Some days she appeared to be quiet and relaxed, and other days she struggled to breathe properly. Clearly her lungs had deteriorated.

15 February 2003

For about a period of a week or more, Patricia appeared to have deteriorated sharply. She slept most of the time and it was difficult to wake her up. Even when she was awake, she appeared to be ‘out of it’. And then she suddenly picked up and she seemed to be back to where she was. I wondered if perhaps she’d had either a chest infection or some other infection which she managed to cope with. About that time, I met with some of the medical team at the hospital. They reported that Patricia was continuing to deteriorate and that the decision to keep her there was clearly the correct one.

Any communication with Patricia had by then become almost impossible. I found that when I used the alphabet board, she badly misspelled words but was not aware of it. Also, she would try and say something to me and I wouldrespond by saying that I could not hear her and for her not to try and speak but use the communication board. She immediately repeated what she had been trying to say before. So I again told her not to talk but to use the board instead. Again she tried to talk. I mentioned this to the Neurologist and she called it ‘perseverance’ which is the inappropriate persistence or repetition of a thought or idea. From memory, I think she said it was not uncommon at this stage of a progressive neurological illness.

Her pressure sore(s) continuedto be a problem and it seemed to be more a case of managingthe situation as the likelihood of it repairing it was slim.

20 May 2003

Looking back over the last three months, it almost seemed as if Patricia had stabilised. She had periods when for several days in a row, she was very tired and appeared to be struggling with her breathing. And then all of a sudden, she was quite alert for a few days. I suspected that she must have been getting minor infections which knocked her about quite a bit but she was able to eventually overcome them.

She still had the pressure sore on her coccyx but it had improved. And she had clearly lost more weight.

Mentally she was still quite sharp but not as sharp as she used to be.